Wednesday, May 28, 2014

You, yes you, need Autistic friends

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.

The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I don't mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don't mean "translate my child to me" (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First, and possibly most importantly but mileage varies: your child is noticing things. If you go through a mourning phase, or a difficult adjustment phase, your child will notice and possibly blame himself. Your child may not have the vocabulary for it, but at some point he will figure out that he isn't the son you planned for and dreamed of, and he might blame himself for that. We figure it out when we're a disappointment, even if you do your best to hide that you're having a hard time. Many Autistic children get in our heads, accurately or not, that our parents only tolerate us because they're stuck with us.

Your child needs to see you choosing to be around people whose minds work like his. It's much harder to think your parents hate you and hate your brain when they seek out the company of people who think like you. Seeing the adults who are dearest to you--and like all children, Autistic youth default to loving their parents--seeing them find someone who reminds you of you? That's supremely important. Do not underestimate the effect this can have, just knowing that your parents would choose to be around you even if they weren't "stuck" with you.

Another reason: many disabled children never meet an adult with their disability. You might be surprised, and a bit saddened, at the conclusions we come to. Some folks come to the vague idea that we'll outgrow our disabilities (and when there's no sign of that, we're reminded that we're disappointing, because you can bet we're getting that message from someone in our lives). Or, I have friends who concluded that their disabilities were fatal. That's a recipe for severe anxiety, thinking that you're dying but you feel fine and no one has felt the need to talk to you about your inevitable demise. We need adults like us; this anxiety is completely unnecessary.

Your child also needs role models. She may not be able to fill your shoes, or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in her immediate sphere. But my shoes may fit, or those of another adult Autistic. All children need people in their lives who they can realistically emulate, & Autistic children are no different. I was pretty young when I knew the adult-woman things being modeled for me were just not going to happen ever--and alternatives were never presented. I was surrounded by folks who were similar to each other and not much at all like me. This is stressful. Making your own make is hard, and it's harder when everything you do is wrong (the premise of somewhere between many and most autism therapies, and a message also sent by peers, random strangers in the store, other adults, etc). Once again, anxiety. It's easier to believe you aren't Doing It Wrong when you know happy adults who took similar trails. Knowing options for the future? Seeing unconventional but fulfilling adulthoods? So important.

If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can't speak for everyone) welcome friendly parents, but your child is one of us. It's wonderful but also overwhelming and scary to discover a place where you're "normal" when you've never been, especially all alone. Even good overwhelm is unpleasant when it gets too big. You can make this less of a shock by having Autistic friends. "I'm not alone" doesn't have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn't alone, that there's a whole community that will embrace him because he's one of ours. The gift of growing up with this knowledge? I cannot imagine it having anything but good effects.

Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're good friends. We might provide insight to things about your kid that you never thought of, completely on accident. Your way of looking at the world may accidentally clarify things for us, too. But in my experience, Autistic people are the funniest people on earth, and the most dedicated to making sense and to fixing things that are not right (admittedly, my sample might be skewed, but I also have a very large sample size). That's how the people I hang out with roll. Making friends with us isn't just good for your child. We're good for you, too, and you can be good for us. A true friendship is a mutually beneficial relationship. We have a lot to offer each other.

So breathe, put down the pamphlets about all the different therapies, breathe again, and look in your networks for some Autistic connection. It'll make your life, your child's life, and some local Autistic's life, better.

Seems like good advice, but how would you suggest going about doing this? I have friends on the spectrum, but they aren't my friends because I needed to meet some neurodiversity quota. They're my friends because they're my friends. They might have reasonably been insulted if I'd sought out their company *because* they're autistic.

Good, you *should* have Autistic friends bc they're your friends, not bc they're Autistic. If it isn't a relationship of mutual respect it isn't frienship...which is why finding people with similar interests is so important. "You have a brain like my child's and we have nothing at all in common" doesn't really work, that's a different thing.

Some people, however, really need to diversify. Their kids need it. Kinda like I was confused about things bc all my mom's friends (when she had friends) were white & I'm biracial. She didn't need Token PoC Friends but she needed to be mindful about what she was, & wasn't, exposing us to.

Great post, love the thought behind this, and think you are totally right. May not work for everyone, but I think most of us parents of autistic children can meet and make friends with other parents of autistic children, and you know there's always more than a few traits there :)

this this this this this this. Some parents understand, and some are desperate to cure their children or make us feel like we're broken. We're not. If I'd ever met an adult who was like me, I genuinely think I'd be a different person.

This post is excellent! I moved a couple of years ago and I don't see any friends on a daily basis anymore. But I do have the internet! :) I have to say, that even if a parent can't find an autistic friend, reading blogs like yours is a big step in the right direction. Parents need to know that their kids will grow up and lead a normal life...a happy, productive life.

"Parents need to know that their kids will grow up and lead a normal life...a happy, productive life."

Many do! Some others remain nonverbal or unable to live independently, though, and the implication that they don't count somehow makes me uncomfortable.

I would imagine that if you're looking for adult autistic people for your kids to meet, it's more difficult to find this subset spontaneously. Someone who requires a supportive living arrangement probably won't be hanging out at the local coffee shop or a club for people sharing particular interests. Would you recommend making a special effort to try to meet people along diverse points on the spectrum? Do nonverbal autistic people tend to be less interested in such encounters?

"Many do! Some others remain nonverbal or unable to live independently, though, and the implication that they don't count somehow makes me uncomfortable."

There is no reason why someone who's non-verbal, non-speaking, or unable to live independently can't also be living a happy, productive life. And "normal" is really in he eye of the beholder, so...

I know non-verbal/non-speaking people who are writing, having friends, having hobbies, and being amazing activists. I know people who actually cannot live independently who work, and do all that stuff besides.

Needing help with stuff only means you need help with stuff. Not being able to talk only means you can't talk, not that you can't do anything or have a decent life.

"Someone who requires a supportive living arrangement probably won't be hanging out at the local coffee shop or a club for people sharing particular interests."

Nonetheless, it may indeed be harder to meet people from this sector of the community spontaneously, for a whole variety of access reasons.

I think the internet advocacy communities like TPGA and Ollibean are good places to start. Get familiar with people there and with different writers...some will be in your area or might know other people who are.

I'm not so sure that non-verbal people as a group would be categorically less interested in neurotypical adult or parent friends, but...some people would be interested in pursuing those relationships, and some people would be less so, for many reasons of individual preference.

Okay, general note for people wondering HOW you find autistic friends...

You most likely already have them.

So let's just accept that the population-wide rate of autism is 1 in 68. (It's probably actually higher, but...)

So if you know, say, 100 people...chances are that you DO know at least one autistic person. Do you know more than 100 people? You probably already know multiple autistic people. Or people you know do, whether family members or friends. Maybe more or less depending on particularities of your community or workplace.

The thing is, autistic adults have many good reasons, unfortunately, to not be open about their place on the spectrum.

-People who are not formally diagnosed may feel like they don't have a right to identify as autistic or to talk about their experience.

-People may fear losing their jobs.

-People fear losing their independence.

-We hear people, including people we like and respect, say horrible, ridiculous things about autistic people all the time, because it's one of those things it's just widely acceptable to make wild speculations about (like that it's caused by vaccines, or mercury poisoning, or air pollution, or that we're serial killers, or that we have no empathy, etc. etc. etc.) or engage in stereotyping like that we're all either savants, or "very high-functioning," or totally unable to communicate, have decent lives, and make decisions.

-So we're rightfully afraid, and often just tired, of what people will think and say if they learn we're autistic.

-We've been abused and made fun of and discriminated against for stimming or other natural mannerisms or body language or speech patterns of being autistic. So many people have learned (or been forced) to hide those signals and pass as non-autistic.

-Some people have internalized messages of ableism and inferiority and don't even want to think of themselves as autistic, and don't want to be identified that way.

Understandably, many people don't want to deal with all these complications that being open about their autism can entail.

Yes, this makes it hard for you. When you go "Hey, do I know any autistic people?" not very many people are likely to go "Oh hey, me!" (Though some might.)

Be a consistent friend to all autistic people, though, and people may feel safer being open around you. When you hear misinformation being spread, speak up against it. When you hear ridiculous speculation about causes, speak up against it. When you hear people repeating the myth in any form that real autistic people can't speak for themselves, speak up against it. Write comments or letters to the editor to counter stereotyping or bad reporting in the media. Speak up when you hear "autistic" being used as an insult, or implications that we lack empathy or some other aspect of humanity. People often just assume when they talk that real autistic people could not really be in the room with them, hearing what they say, or that anyone who could be wouldn't be autistic enough to count. Speak up against those assumptions when you hear bullshit being bandied about.

Stand up for people who your peers denigrate as awkward. Be genuinely friendly and respectful to those people. Treat them like real friends.

People will see and hear you do these things. And someone might just feel safe enough to let you know that they are an autistic person.

Keep your eyes and ears open...be a safe person to autistic people...and you might wind up surprised at how many autistic people are already in your life in some way.

I'm unable to live completely independently. Last time I tried, I set fire to my apartment. Three times.

K's post didn't exclude me. It included me by acknowledging that I'm capable and competent.

I hold down a job. Needing a supportive living arrangement does not equate to being unable to manage yourself in other ways. It just means you need supports.

Allow me to draw an analogy: Let's say a person has dyslexia and needs help with reading. This person might need supports like a screen reader. Does that mean they must be incapable of living alone? Of course not. Just like not being able to live alone doesn't mean I can't do other things. Disability is not binary.

I have autism and trouble with executive function and dysgraphia. After a long day of social, I need some help at home. It has nothing to do with my ability to write an academic paper.

I would imagine that ... it's more difficult to find this subset spontaneously.

You would imagine so, and you'd be right, but not for the reason you think. People in my group are there, but we don't advertise our status because so many people believe that being unable to do Thing A = being unable to do Unrelated Thing B.

People who believe this were the reason why I didn't get real education in English until high school. They held actual education hostage to cursive. Which is a skill I have yet to acquire at 26.

I learned that it's dangerous to me to disclose my disability status. Because people like you damn near ruined my schooling. If someone who could see past my messy handwriting hadn't come along, I never would have graduated high school. The world would be less one scientist, all because I am physically incapable of writing neatly and people assumed that unable to handwrite = incapable of writing.

I wouldn't tell you I'm autistic. Disclosure is making myself amazingly vulnerable, and I don't trust that you'd do good things with that knowledge b/c you've shown you think disabled = incompetent. So I'd keep it to myself.

Someone who requires a supportive living arrangement probably won't be hanging out...

Why not? I am a person. Like you, I have interests. One of those interests is good coffee. If I find a sensory-friendly coffee shop, why wouldn't I go there and have a coffee? If I find a club that caters to one of my interests, why wouldn't I want to connect with others who share it?

Disabled does not mean incapable. I require a supportive living arrangement. Would it surprise you to learn that I am VP of a club and a member of another? I have interests just like you do, and just like you, I like to entertain them. Why would you assume I can't? This is what I'm talking about regarding the assumption of disability = incapability.

Would you recommend making a special effort to try to meet people along diverse points on the spectrum? Do nonverbal autistic people tend to be less interested in such encounters?

Stop assuming that those of us who need supports in activities of daily living are incompetent. Stop treating us as less than you. Stop making assumptions about what we are and are not like. Think of us as people. We are more like you than we are different. I am not nonverbal, but those I know who are express similar sentiments.

I wasn't diagnosed until adulthood, but I knew from a very young age that something was "wrong" (fundamentally different) about me. My mother not only never had any friends who were like me, she also divorced the only other person I did know like me (my father) when I was two. To my two-year-old self that looked a lot like "cutting this person out of her life because he is fundamentally messed up," which looked a lot like "and she'll abandon me too if she finds out I'm Like That."

It's taken me decades to recognize that and get past it. None of it was intentional on my mother's part; nobody knew either my father or I was autistic, for one. But I think I might never have had to do most of that work if I had just had evidence as a child that my mother voluntarily chose to hang out with people who were fundamentally Like Me. I might have grown up believing she actually did enjoy our company, instead of just putting up with it.

I wasn't diagnosed until adulthood, but I knew from a very young age that something was "wrong" (fundamentally different) about me. My mother not only never had any friends who were like me, she also divorced the only other person I did know like me (my father) when I was two. To my two-year-old self that looked a lot like "cutting this person out of her life because he is fundamentally messed up," which looked a lot like "and she'll abandon me too if she finds out I'm Like That."

It's taken me decades to recognize that and get past it. None of it was intentional on my mother's part; nobody knew either my father or I was autistic, for one. But I think I might never have had to do most of that work if I had just had evidence as a child that my mother voluntarily chose to hang out with people who were fundamentally Like Me. I might have grown up believing she actually did enjoy our company, instead of just putting up with it.

@Chavisory:I know non-verbal/non-speaking people who are writing, having friends, having hobbies, and being amazing activists. I know people who actually cannot live independently who work, and do all that stuff besides.

Good point. When I said "nonverbal," I meant unable to communicate in any way, even with assistive devices, but I should've spelled it out.

@ischemgeek:Needing a supportive living arrangement does not equate to being unable to manage yourself in other ways. It just means you need supports.

I did conflate those two things and shouldn't have. I'm sorry.

Stop assuming that those of us who need supports in activities of daily living are incompetent. Stop treating us as less than you

There do exist people who not only need support in ADL, but also aren't currently able to function in a work setting ... yes? People who don't ever make it out to coffee shops or clubs? I don't think that makes them "less than me." I don't think competence in a work setting is the measure of a human being.

"Good point. When I said "nonverbal," I meant unable to communicate in any way, even with assistive devices, but I should've spelled it out."

So...yes, there are people who are currently unable to communicate in any way that is conventionally understood by the people around them.

A truly FRIGHTENING number of those people...have never been given access to AAC devices. Have never been given a keyboard and taught to type. Have never been given a chance to work with a facilitator on methods that may one day enable them to communicate independently.

Because a frightening number of people actually believe that whether or not someone speaks is an accurate signal of whether they think at all.

Because too many people DO presume that non-verbal actually means "unable to communicate in any way," but... given the number of people who aren't even given a fair chance to try...? You know?

87%, last I heard, of autistic people can speak at least some of the time. An even larger percentage can communicate in some other way. Yet people persist in acting like the ratios are inverted from that.

"There do exist people who not only need support in ADL, but also aren't currently able to function in a work setting ... yes? People who don't ever make it out to coffee shops or clubs?"

Yes, of course there are.

But they probably have internet access. They still live *somewhere.* They still *probably* have some kind of involvement in their community...again, unless they have been institutionalized, or otherwise inappropriately confined or restricted from doing so...which sadly, they often are.

Question for you...You're in your local coffee shop. You're looking around at the people talking or writing or playing chess or whatever.

How can you tell which of them can or can't live independently? How can you tell which of them can or can't hold down a job?

You can't, and the prejudice that you can is a major, major bane of existence for people with neurological, developmental, and other invisible disabilities.

Of course non-verbal people who need daily living support count. Of course they do. For many reasons, it may be more difficult for you to get in touch with them, but my suggestions remain largely the same, though it will likely take some more diligence and patience:

-The internet. Read their blogs, participate in Facebook forums, make a few Facebook or Twitter friends...you will eventually be connected to some people.-Connections through people you already know. (Keep your ears perked. People do tend to mention it eventually if they have an autistic relative.)-Your local ASAN chapter or college/university student group, and any public info sessions or protests they may be holding.-Get involved in efforts against institutionalization and educational segregation, and building projects for housing that prevents people from living in their communities. You'll get acquainted with the people who would rather be living in their communities as well.

An estimated 87% of autistic people can speak at least part of the time.

An estimated 85% of autistic people are unemployed or chronically under-employed.

That means that MOST autistic people who can speak, are still unable to hold jobs, at least under current conditions.

And that MOST autistic people who cannot hold jobs, can speak or otherwise communicate in some way.

I am not sure off the top of my head what the percentage is of autistic people who can't live independently, but it's high. (Although some of it may be due to financial reasons, because unemployment, rather than lack of self-care skills.) It's in a realm which suggests that most autistic people who need daily living help can communicate, and most people who can communicate still can't live independently.

Also? The fact that someone can speak some of the time, or can engage in normal-looking socialization some of the time, can conceal the fact that they may still have intense speech or communication challenges, or that they go home and collapse from the effort. Like...I work full-time. I can live independently. And sometimes I can't talk.

So I think you may really need to recalibrate your ideas of how all of these factors are related. Autistic people who have real communication challenges, who don't work, who need support to live, are probably all around you, but you're working off a preconception of what they must look like that may not be accurate.

"A truly FRIGHTENING number of those people...have never been given access to AAC devices. Have never been given a keyboard and taught to type. Have never been given a chance to work with a facilitator on methods that may one day enable them to communicate independently."

Yeah. Access to one of those devices AND facilitators who help the person learn to use it requires either sufficient personal funds or state funding. I have no idea how much state funding there is for this, but I'm guessing not a lot.

It's bad enough to think about supposedly uncommunicative autistic people who were unlucky enough to live before ACC existed. It's horrifying to think of how many *could* communicate and don't because of lack of access.

Regarding finding friends on the Internet, that's a good point, and I'm not sure why I was thinking exclusively about meatspace. Posting on a message board that you want your kid to have adult autistic role models and seeing if anybody volunteers seems less potentially offensive than meeting somebody IRL and saying, "Please be my friend because I don't have any autistic friends that I'm aware of!"

It's often not a matter of availability of devices or funding, though. Several organizations can help provide funding for devices when insurance or state funds won't.

It is often a matter of communication devices actively being withheld by therapists or educators, because of faulty beliefs about what makes someone ready to communicate.

I have now heard multiple tales of educators having told a parent that their child could not learn to use a device, or *should* not be given access to a device until they'd demonstrated unrelated skills, or should have their access to their communication device restricted to only certain hours of the day, until they'd learned to use it only in certain ways. Or that if they had any possibility of *some* speech, then they shouldn't have a device because it would be a disincentive to using speech or interfere with their speech development (which it doesn't, but this remains a widespread belief).

The monetary cost of getting devices and training into people's hands is important, but hugely at play here are prejudicial beliefs about who can and can't communicate in a worthwhile way.

Until a lot of those things get re-examined and debunked on a huge scale, I'm really uncomfortable writing off anyone as "unable to communicate in any way." Because the effort to LET them has not been there.

Actually, AAC probably never not existed, given the number of HoH and Deaf children who developed home sign with their families back in the day. AAC is not a recent invention. People need to communicate. If they're supported in their attempts, they'll usually find a way.

Which actually brings me to why I'm wary of referring to people as "completely unable to communicate." In my experience, communication breakdowns between disabled people and abled people around them happen when the abled people say, "No, you have to communicate how I tell you to."

Case in point: When I was a kid, I had a stutter, and it got worse when I wasn't at home because of stress. I could communicate with others, so long as they gave me the time to finish a sentence - and because of how stutters work, if I didn't have to stress about trying to get the sentence out fast, I didn't stutter as much.

A lot of people took the speed I could talk when I was comfortable with a person as the speed I should be able to talk all the time. Worse, people didn't want to wait. They'd interrupt. Make fun. Play 20 questions. Some would just tell me "Shut up, no one cares." And it wasn't just the other children. Adults treated me like this, too. They took the fact that I was sometimes able to speak smoothly and used that as "evidence" that I could "talk normal" if I really wanted to. And given that you're a nonautistic person who presumably doesn't have a speech impediment, I ask you this: Are you able to speak at a normal cadence and speed without getting derailed while you're being constantly interrupted, insulted and have someone playing 20 questions? I'm pretty sure you can't.

Eventually, I realized that as terrible as my handwriting is, it was faster for me to write something out slowly enough to be legible than for me to speak it when dealing with someone like that. So I started carrying around a paper and pen. That was no good, according to the others. I was being a weirdo. Or lazy. I was letting my stutter win. I should try to speak. I shouldn't give in by writing stuff out that I couldn't get out any other way. Most of my teachers would just throw my notes out without reading them and tell me that if I wanted to tell them something, I would have to "just say it." But then they wouldn't let me say it because I stuttered.

So I just stopped communicating with people at school. I became a pariah because the kids called me stuck-up and snotty. The parents and teachers said I just needed to try to fit in more. When I reported bullying to my parents, they didn't believe me, in part because I hadn't reported it to the teachers who wouldn't support my communication attempts.

There are more autistic people I've met who have similar stories than I can count. Given my experiences, I am not willing to write off any autistic person as "completely unable to communicate." That's presuming incompetence. I view autistic people who cannot currently communicate instead as able to communicate, but the right communication method has either not yet been found or is not supported.

Why? Because so many times, I was trying to communicate, and they brushed me off as not trying at all. And I was and have been all my life partially to mostly verbal. How much worse is the prejudice facing nonverbal people?

I know that people who cannot speak exist and that those without reliable AAC exist. But I don't think that the overlap between those groups should be called "completely unable to communicate." because that sets up a self-fulfilling prophecy where people write a person off as unable or unwilling to communicate and so don't support their communication efforts so they're unable to communicate. I've fallen victim to that self-fulfilling prophecy before, and I have an idea of how frustrating it can be. Except for me, it wasn't my whole life.

Just one more note: The memorial vigils that ASAN holds every March 1, for disabled people murdered by caregivers, are a really great place to both show your support for the autistic community, and to meet and interact with people with a wide range of autistic expression and communication abilities.

Great article. True for all kids with disabilities. Parents need adults with disabilities in their lives so disabled kids can have role models, and community that includes people like them!

A really negative result of not having this is disabled kids being estranged from disability community because they have been told they are different, "not like those people" and they end up feeling that they don't fit anywhere. Parents see the most severe expressions of their child's disability and their own stereotypes lead them to distance themselves and their child from that. Years of " normalization" theories and approaches didn't help.The important point here is not to make disabled people of all kinds more like non- disabled folks, but to normalize disability!

Do virtual friends count? If not how the heck do you find and approach someone. I've connected with many autistic adults but none live in my area. I have one acquaintance in my area, but it was always a small town not many ppl you dont know kinda thing...everyone else I know anywhere close are parents *sigh* add in that Im quite socially inept myself irl its quite difficult. But i do love the part about accidentally learning things. I find on the blog posts I read, the comments often go in different directions that may apply where the post itself didnt directly. Also just the interaction between autistics in comments is helpful to witness in itself. But anyway Id love some day to go to a conference or any such thing and meet all of the people who have made such a big difference in my, and my sons life. I'd still have no clue what to do or say though lol